Hi everybody, this is my first time posting and I’m just looking for a little help on how you all cope? I was diagnosed in December 2013, my first day of Christmas was a diagnosis not and partridge in a pear tree. I have a baby girl who is just turning 1 in April, I’m getting married in May and my fiancé works away so at the moment I feel like a single parent, I have help from family but don’t want to over do it, they don’t really know what I’m going threw, I’m tired all the time and numb down my left side, I feel very weak too. How do all you parents cope? Im worried I’m not being the best mum I can Thanks, Mairi
Hi Mairi, I am sure you are a brilliant mum, why else would you be asking for guidance. My advice to you is don’t try to be supermum, if it’s a choice between quality time with your daughter and hoovering the lounge, spend time with her. They grow up far too fast and you can’t get that time back. The hoovering will still need doing tomorrow even if you do do it today. Take any offers of help you need, be it shopping, ironing etc. your little girl needs you and it’s the only way you can give her your all. Finally don’t beat yourself up, you are doing a great job, more than likely. Go easy on yourself and take care. Plenty of early nights and a good diet. J x
I am a year ahead of you on the MS road (diagnosed Christmas 2012) so I completely get where you are coming from in terms of worrying about your children.
However, after the inital bad period of constant relapses and starting DMDs, my symptoms settled down a lot and I’ve found that things have more or less gone back to normal. I did a few things to safeguard my future like applying for housing, starting a savings account while I’m still working and hopefully in the near future I’ll be able to reduce my working hours a bit as I am finding I’m not quite as able to do everything as I once was.
My daughter has accepted that the new me can’t run and play as much as I once could and that if we have a busy day I might need to lie down and have a sleep. She’s 11 now so she’s a bit more aware of what is going on.
Anyway, I do think that given a bit of time, the MS just becomes part and parcel of life and you get on with it as best you can. I’m a single parent and I work fulltime so I suppose I’ve always had the concern that I wasn’t around enough for my daughter or being the best I could be…but over the years I’ve learned to stop beating myself up over things I can’t change and as long as I do my best I’ve no reason to feel bad. She’s turning out to be a smashing little girl so I think I’ve done a damn fine job so far and I’d say you have too and will continue to do so, even if things have to change a bit.
I have a 4 year old and had MS before she was born and went ahead anyway which I am very glad I did!
My advice is dependant on child age, so!
Below 6 months and hopefully not moving too much:
Changing mat/basket upstairs and downstairs
Have bottles etc ready for day
Dont wait to be offered help, you will have to ask
Pay for some help if you can
Use Health Visitor for as much support and advice as possible
Believe it or not this is easiest and most boring part, then
they start to move and are only interested in doing something if dangerous or life threatening (6 mths on)
Teach them to crawl up and down stairs as a game under supervision and avoid carrying them if at all possible
Marry a useful husband, I only started to bath my daughter lately
Remember you have to be well to look after them
Worth it
Rushing so will go!
I have a 7 and a 4 yr old and I’ve had problems with MS for 4 years now so since they were very small.
I think its important to remember you’d have the mummy guilt of worrying you weren’t doing well enough even if you didn’t have MS, it is incredibly draining having children.
Go easy on yourself, it’s possible to be fun sitting still and not doing very much (not that 1 year olds are very in to being still!)
My husband was away a lot when they were small too, you just have to do what you can, accept any help you can get, learn to ask for help too (I am rubbish at this!).
Take care of yourself, you’ll be ok xxxxx
Hi Mairi I have a 5 yr old daughter and was dx almost 2yrs ago now, it’s not easy and I tend to spend a lot of time feeling guilty that I can’t take her down the park, go out on days trips etc as shortly after dx I was hit with a big relapse leaving me unable to walk for a couple months and I’m still now trying to recover from it! But you’d be surprised how adaptable children are, my daughter knows that ‘mummy has poorly legs’, and can’t run around after her all the time and that sometimes she needs to help me - she really enjoyed helping with the housework at the weekend! Overall it’s learning to plan your daily tasks more than before, pacing yourself and not over doing it. Remembering to enjoy the time with your baby girl and putting your feet up and relaxing when she sleeping. As she gets older she’ll become more independent which will help, although she’ll need your support in different ways, it’s not easy but ultimately you want to continue living your life as normal as possible and not let the MS win - easier said then done I know, sometimes I think I need to take my own advise! Good luck and enjoy life with your little girl. Liana X